I first heard of Lupus in 2016 when my GP told me that my blood test results indicated SLE (systemic erythematosus lupus). However, like many, my symptoms started years earlier.
During university I suffered with extreme tiredness, headaches, depression and frequent infections. I often felt completely out of my depth and unable to keep up with deadlines and a university social life. I spent every other week in the campus surgery trying to make the nurses and GP understand that I wasn’t being a hypochondriac. I distinctly recall one appointment when the doctor told me that I was tired because I was a student that had been going out and drinking too much. I remember wishing I had been going out too much instead of getting into bed at 9pm.
With the support of family and friends I finished my degree in 2015 and moved back home to Surrey. That summer after I graduated I started feeling better – perhaps due to the removal of university stresses – and started to train for a charity 10 mile run. I also began enjoying seeing my friends and undertook an internship in London. I completed my charity run in October and immediately my health took a turn for the worse. I started to find myself extremely low on energy, with aches and pains and general malaise. I found going to work exhausting and used to get straight into bed when I came home. My social life completely deteriorated and I had no desire to leave home if I didn’t have to.
I went to my GP in February 2016 and was sent for a blood test to check for anaemia, which I had a history of. The following morning, which was a Saturday, I got a call from the out-of-hours doctor informing me that my neutrophils, a type of white blood cell that fight infections, were extremely low and that I should go to the county hospital for a repeat blood test. My mum drove me up and we spent our Saturday in A&E having more tests. The doctors there confirmed that I had some white blood cell abnormalities but that it was safe for me to go home, but not to go into work because of the risk of infection. I spent the next couple of weeks at home, mostly in bed, waiting to see a haematologist.
What followed was months of scans (PET, MRI, CT, and ultrasounds), blood tests, investigative tests and appointments. Then my GP informed me that my blood tests indicated something called lupus (positive ANA test, positive anti-dsDNA and low C4 plus neutropenia). I was referred to a rheumatologist and started to receive medication to help with my symptoms. Since then, it’s been a difficult path with new symptoms appearing; I have lost count of the number of different consultants I have been referred to. Now I suffer most with headaches, joint pain, muscle aches, fatigue, Raynaud’s syndrome and occasional skin rashes amongst other things. However, I have received fantastic care from my GP, the NHS and particularly my family and friends.
What I have struggled with most is adapting my lifestyle to suit my symptoms. I have often felt frustrated and angry at myself for not being able to lead the life I thought someone in their early 20s should be. I can also get anxious as I can't predict how I'm going to feel and often have to cancel or change plans at the last minute because I don't feel well enough. Lupus is an unseen illness, which sometimes makes it harder for people to understand what I’m going through. At the moment, I have managed to find some stability in my symptoms by pacing my activities, taking things easy when I can and taking the right medications. I also practice and teach yoga which I find helps my physical symptoms and keeps stress at bay.
This year I have decided to take up a huge challenge by running the London Marathon 2020 for the Lupus Trust. I will be training at my own pace and trying not to let the prospect of 26.2 miles overwhelm me. The London Marathon has been a goal of mine since as long as I can remember and I thought I would never be able to do it. I’m excited and also terrified at the challenge! Training has already thrown up some problems and injuries, but I’m going to do my best and hope I raise awareness and lots of money for the Lupus Trust.
